This is an attempt to give our family and friends a glimpse
of our baby Carter's llife. I hope this will help you better
understand O.E.I.S complex (Cloacal Exstrophy). Carter is a true blessing and God has a special plan for him.

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I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. Psalm 139:14

How could it be...

I am not even sure where to start. I am not even sure I should post this, but have I felt a sense of guilt by not letting everyone know. Carter has not been feeling good for the past few days, so I decided to take him to his Pediatrician to make sure everything was ok. We are still not sure exactly what's going on with Carter, but are praying its just a virus. We did however receive the results from our pediatrician on Carter's MRI he had back in December. We are still waiting to hear Carter's Neurosurgeons opinions, but are completely shocked and lost for words from the report our Pediatrician has received. I will first start out with Carter's spine. Everything seemed to be the same as it was last year and there are no real changes. This is great news. This means his spinal cord has not retethered and the repair of his myelocystoceles is stable. We were thrilled to hear this. The report of Carter's brain was not so great. It was heartbreaking, painful and I honestly got the same knots in my stomach the day I did when Brandon and I found out about Carter's birth defects. The MRI of Carter's brain showed there was an absence of his septum pellicidum. Absence of his septum pellicidum, meaning part if his brain is not there! What in the world?! How is this possible? How did Carter have a major spinal surgery at 6 months and this was not picked up on? How in the world did I have an ultrasound twice a week for the majority of my pregnancy and this was not noticed? How has my precious child survived this long with EVERY one of his organs being effected in some way by these awful birth defects? How did no one know?! These are all questions Brandon and I have asked over and over again.

We are still in shock and we are praying for a miracle. We have had many sleepless nights and are still just really confused. I think most people expect us to be angry with God, but we are not. We are so thankful God has given us this precious child. He has trusted us with so much and since the beginning we have promised to share our gift and give God all the glory. Although our hearts are completely shattered, we will not give up. This is just another journey. It is going to be a journey through a very unknown land. Neither Brandon or myself know much about the brain. Being a nurse I know some of the anatomy and a few things, but absolutely nothing about the septum pellicidum or absence of the septum pellicidum. I have done some research on my own and it seems like there is a wide spectrum of living without a septum pellicidum. Some children do not live past birth, some are in a vegetative state and some are mentally stable and live without any impairments what so ever. A lot of the things I have researched about it do not apply to Carter. In fact the only thing I have read that may apply to Carter is it can affect speech. The only real delay Carter has now is speech. He is still really struggling to talk although he is trying really hard. He understands everything we say to him and can even sometimes answer with sign language. He communicates, but he just does not talk. It kills me to think that he could want to say something and honestly not have the ability to say it. I have had a hard time finding a lot of information on the absence of the septum pellicidum and am looking forward to hearing from Carter's neurosurgeon at Johns Hopkins. So for now we will wait to hear from him. We have so many questions. I don't want to say anything for sure until I hear from him and get his opinion. Honestly all we know right now are the interpretations from the radiologist that performed the MRI.

We have known about it for a little bit now, but decided on processing it before telling anyone. No matter how hard all of this gets we will always love Carter with our entire hearts and we will both do whatever it takes to get him the best care possible. I know it might sound crazy, but I think things like this just make me love him even more. They make me realize just how special God really made him. If the MRI results are correct this means that Carter has survived 2, almost 2 1/2 years, with cloacal exstrophy and missing an area of his brain. As a mother who has been at his bedside through it all I just don't see how it can be possible. We are completely hurt, lost and confused for Carter. I am so hurt that he has to go through something else. I know God has a plan, but I would be lying if i said i did not want this for my child. He is such a sweet baby. He NEVER cries and loves life. He does not deserve this. No matter how hurt his little body may be God has him in his hands and we will continue to praise him for ALL of the blessings he has given us. Please pray for peace and patience as we wait to hear from Johns Hopkins. Thank you all so much for all of your prayers and as always.. To Him be the Glory!

4 comments:

God bless all of you. I can't begin to imagine what you and Brandon are going through. As you said though, God has a plan and we can't know what it is until it's revealed to us. Our prayer is for you and Brandon to have peace, understanding and comfort as you wait to hear from John Hopkins. Little Carter has been through so much in his short little life and now it's something else. He never loses his smile and he is VERY blessed to have the parents he has. God picks special people to endure what you have and still give Him the glory. Praying you'll hear soon and that it will be good news.Love all three of you,Mack & Dee Kennedy

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About Me

My husband and I married May 14, 2005. On our 5 year wedding anniversary we found out our sweet baby would be born with an extremly rare birth defect known as O.E.I.S Complex. O.E.I.S Complex consist of an Omphalocele (some organs in a sack on the outside of the body), Exstrophy of the bladder (bladder on the outside of the body turned inside out), Imperforated anus and a Spinal defect. Our miracle baby was born on August 20, 2010. He is a true gift from God and we give him all of the praise!